So fun, Hope is showing her teeth again. She pulled out her NG this am and has been smiling ever since. Too cute. The seizures continue for sure but there are brief smiles and little coo's in between.
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Ashley and Hope were born with Adenylosuccinate Lyase Deficiency. This metabolic disorder left them with a damaged brain resulting in seizures and profound psychomotor delay. They were not expected to live past infancy. Although they were palliative care, we kept them at home to love and hold. Ashley died on March 18th,2011 (6yrs old) and Hope followed her home on August 14th, 2011 (4yrs old). We now continue our journey as a 'Family of Four'.
Common Interests...
Blog Archive
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2008
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October
(23)
- Happy day
- Hanging Out
- Grab the camera
- Car rides are good
- Poor Hope
- No change
- Loving the smiles
- Nothing new
- Brod & Ash playing
- EEG yesterday
- Seizures are the 'norm'
- Happy Thanksgiving
- Sleeping
- It just gets worse.
- Still sleepy
- Sleeping
- Lethargic
- To ER
- Not Eating
- Rehab for Children
- Unsure
- Smiles...seizures...puke and poo!
- Time in the Sun
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October
(23)
2 comments:
We are so happy to see the beautiful smile!!!!!
Nicole and Anthony Fischer
Wonderful to see to her smile!!!!
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